Tag Archives: celiac

Comparing emotions with D and CD #DblogWeek

Day 2 of #DblogWeek already !#DblogWeek already ! Today’s topic prompt is “The other half of diabetes”:

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

When naming my blog, I knew that I would write more about life with diabetes than with celiac but I still wanted to acknowledge the impact that both diseases have on my life. What I have been surprised to observe over the last 2 years of sporadic writing here (today is the 2nd anniversary of my blog!!) is actually how little I had to say about life with CD.

What do I mean by that? Well, both diseases affect my life every.single.day. And yet, celiac does not take the emotional toll that diabetes does. Why is that? Well, maybe I should be more specific. It no longer takes the emotional toll that diabetes does.

When I was first diagnosed with each (a year and a half apart), my honest first emotional reaction each time was relief. Relief that what had been making me so sick had a definitive diagnosis, a name and a treatment (no matter how much that treatment happened to suck!). I also intelectualised quickly that while the CD determined what I ate (or didn’t eat, as the case may be), the diabetes influenced the timing and quantity of my meals. I suppose these are coping mechanisms.

Celiac is a more black and white disease. The treatment is a 100% gluten-free diet. That means not a crumb, not using the same toaster or the same serving utensils used for gluten foods, and in some cases, making sure that food has been processed in a gluten-free facility or at least a gluten free line. It’s a lot of knowledge to have about food ingredients and you have to stay current as manufacturing and ingredients lists can change.

It has a ridiculously steep learning curve both in things you need to know and ways to cope emotionally. You have to re-learn how to eat, how to shop, how to think about food, how to enjoy a meal with friends, how to trust someone else to cook for you, how to ask the right questions at restaurants, how to leave the house without the fear of being “glutened”… My diabetes managment all but disappeared during the first 8 months or so of dealing with celiac, and the connections that I wrote about yesterday were far more celiac than diabetes oriented during that time. Only once I had reached a plateau of sufficient knowlege and coping with CD, was I able to start dealing with both diseases.

An important aspect in the emotional toll for me, is that there is no self-judgement with celiac (the judgement is reserved for people who think I do this to follow a fad) and there isn’t any guilt. There can be sadness, especially at first, for what you have to give up. But personally, I am rarely touched emotionally by what I cannot eat. I don’t know if it’s knowing how sick I get when I am accidentally glutened or if it’s just that the whole 100% gluten-free thing is clear cut enough not to be questionned. And there are results. As long as I am gluten free, I have no symptoms and no clinical signs of the disease since the flattened villi in my intestines has grown back.

Diabetes, on the other hand is all about (striving for) balance. Some insulin, not too much, well calculated and at the right times. Some carbs, not too fast-acting, well calculated and at the right times. Some exercise, planned in advance, preferably the same amount at the same time each day… Learn how to handle the stress that life throws at you and stay vigilant to make sure your diabetes devices are always in perfect working order.

And even when I do follow all the “rules”, my blood sugar doesn’t necessarily follow through with the results I’m looking for.  I get a few appointments with a specialist each year which can feel like the quarterly judgement for all moments I haven’t been perfect. But even the medical professional judgement is nothing compared to the self-judgement that happens daily as blood sugar levels spike and fall.

Diabetes “results” are also a lot less tangible. Whether or not my overall diabetes management is on target and whether or not I’m coping well currently, my blood glucose levels still go high and still go low, which influence hormone levels in my body, which influence emotions, which influence blood glucose levels… and on and on.

So 19 and 18 years later respectively, diabetes takes up much more of my mental and emotional space than CD. Most of the time I manange to cope well but there are definitely times when other aspects of my life take precedence and coping with chronic illness no longer has enough head space to get dealt with. The only tip I have goes back to what I was saying yesterday. Sharing my story and hearing others’ stories – knowing that I am not alone in dealing with this – is the most powerful way for me to manage the emotional roller coaster.

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Gluten free quarter pounder in Oslo!

I have had so many amazing experiences over the last 6 weeks that I want to write about but beyond the craziness of #dblog week, I simply haven’t had time to sit down and sift through everything. So I’m going to start with a quick post on something I never thought I would write about.

I’m currently in Oslo, Norway, to attend some meetings for work. I have my trusty Gluten Free Card app that explains celiac and the can’t-haves and can-haves of a gluten free diet in every language. I also know that most people in Norway speak close to perfect english and nordic countries in general are pretty aware of celiac disease and have a good offer of GF foods.

So I’ll admit that I didn’t do a whole lot of research about where I could eat before jumping on the plane. After arriving and finding my AirBnB apartment for the next two nights, I went off to wander around downtown. Eventually I found my way into a Starbucks to take advantage of some free wifi.

A few quick google searches came up with an all gluten free bakery that has closed its doors for good, and a couple of other places that were either already closed for the evening or a little too far out of my way to get to. Several websites also stated that it is fairly easy to eat gluten free in most restaurants – they get it.

But then I happened on a McDonald’s link. What was this doing on a page about GF eating? Well, as it turns out, all over McDonald’s Norway have gluten free buns for their burgers. The last time I had a meal chez MacDo (the french slang that I have gotten used to hearing) was almost 7 years ago and it was because there was no other possible choice. I was limited to salad and fries.

My CD diagnosis was 17 years ago and I think the last burger I had from McDonald’s was likely about 20 years ago. So even though I’ve never been a fan of this type of food, I decided to give it a go – just because I could. QuarterPounderwm The taste was exactly as I remembered it from 20ish years ago (which is a bit strange given the amount of time that has passed and that it was on a different continent), although I suspect the GF bun is actually better bread than the “normal” one. There. I’ve eaten it. Now I’m good to go for no more McD’s for another 20 years! And on my way back to my little apartment, I stopped by a supermarket to see what they have in their GF section. So I picked up these. It’s all super carb heavy, but I always like to bring a few things back that I can’t find at home… GFfindsinOslowm Travelling with celiac disease can sometimes be a bit nerve-wracking but on the flip side, it’s fun to make some new finds.

#dblogweek 2015 – Favourites and Motivations

And for my second post of the day… to at least attempt to catch up on #dblogweek! The topic today is “Favourites and Motivations”. After only a year of blogging I had a hard time picking a favourite bit of my blog, so I’ll share with you some of my motivation for being here.

I have understood from the day of my diagnosis how important it would be to connect with other people with diabetes. It all started as I lay in the ICU with bruises up and down both arms from all the IVs and artery lines that the doctors had placed with difficulty, the night before. But I was already feeling better 18 hours after diagnosis and the symptoms of my DKA were clearing up quickly.  Only close family were allowed into intensive care but I was very glad to see my uncle, who had by then been living with type 1 for 37 years.

I saw his concern for me and his sadness that someone else in the family would have to live with diabetes from now on. But I also saw his relief at no longer being alone in this and felt a connection with him that we had never had before. I hadn’t been able to adequately describe to anyone until then exactly how horrible I had felt in DKA. How unbelievably dry my mouth was, for example. No, not like when you’re really thirsty, more like when there is no saliva left. At all. But I didn’t need to explain it to him. He knew. He had been there.

So it was never really a question in my mind. If I wanted to live well with this (and I did!), I knew that I had to find peers to share stories, to compare notes, to support and to be supported by.  I joined an online forum while I was away at university and when I got back to Toronto after a few years, I found a group of women through the local chapter of the Canadian Diabetes association who became my core support group for a number of years.

I continued to participate in a few online forums, especially the Delphi “Diabetic Mommy” group. That group has been a lifeline through preparing for pregnancy and dealing with diabetes through pregnancy and motherhood. I have met only a few women from that group in “real” life, but I consider a number of them to be good friends. I also was very active for a number of years on a Celiac disease forum. The learning curve is so insane when you first go gluten free, that I don’t know how anyone does it without some support online or off.

A few years later, as the first D-blogs started appearing, I became an avid reader. But I think what held me back at first from starting my own blog was that I don’t love to write. I knew could respond to forum posts with supportive and well-informed answers, but I think I was a little intimidated on some level to create my own content rather than responding to others. So for years I put it off. But I have come to realise that as a diabetes advocate, it is important to have a personal space on the web to be able to share ideas in a more open space than what you can find in a forum or Facebook group.

I still find it a little scary to put myself out there but knowing the support I have found and have been able to share over the years of connecting with other PWD, that is motivation enough to share my thoughts with all of you. Sharing my story certainly helps me deal with my own diabetes and celiac disease and if just one person finds comfort in what they read here, my effort is worth it. And that motivates me to continue.

Balancing Diabetes, Celiac disease and Parisian bakeries

Today is #dblogcheck day. The idea is to leave a comment on every diabetes blog post
you read throughout the day – even if it’s just to say “Check!”. It allows everyone who
contributes to the diabetes online community to know that their voice is being heard.
You can read more about it on A Consequence of Hypoglycemia.

After my celiac diagnosis in 1998, I put diabetes management on the back burner for a while.  The learning curve is steep when you first have to cut out all traces of gluten from your diet so for a few months I ate whatever – as long as it was gluten free – and didn’t worry quite as much about matching the insulin dose to what I was eating. I found I could only master so many skills at one time!

Thankfully I did learn how to eat well while cutting out the gluten completely and after 8 difficult months, including a 30 pound weight gain and a 5% HbA1c increase, I felt comfortable enough with managing both diseases that things came back into order relatively quickly. I lost the extra weight over the next year and within 6 months, I had my A1c back under 7%.

Once things were back on an even keel, I realised that these two diseases are, in fact, manageable together. (Not always easily, not without frustration, but definitely made easier with the support of online communities!) I came to realise that the celiac dictated what I ate (or rather what I didn’t eat) where as the diabetes had more of an influence on the quantity of food/carbs and the timing of my meals.  And once I was on an insulin pump even the quantity and timing weren’t as limiting as they once were.

The main challenge that remained was counting the carbs (especially in the relatively high carb gluten free alternatives to some normally gluten-full food choices) and then of course matching my insulin doses to my carb intake.

I was diagnosed with diabetes and CD 18 and 16.5 years ago, respectively and much has changed in the world of gluten free food choices since then. I still cook most of my own meals from ingredients that are naturally gluten free, but I definitely eat store bought gf bread & pasta, some home-made cookies & cakes and the odd real treat from a gluten free bakery.

The offer of good gluten free food choices is still greater in english speaking countries although it has also been improving by leaps and bounds here in France. In the last 3 years, no fewer than four gluten free bakeries/Cafés/restaurants have opened in my neighbourhood. Not just “somewhere” in Paris but within easy walking distance of home. Helmut Newcake, Thank You, my Deer, Bears and Raccons and Chambelland each have a slightly different and therefore very complementary offer in gluten free wares.

And because sometimes I do venture beyond my own neighbourhood, the gf options across the city are also increasing: Helmut Newcake’s second location, Noglu, Biosphère.  I have tested most and they all get my full marks of approval. They each are the kind of place that anyone could buy real french pastries & bread or eat a meal and not realise that what they are eating contains absolutely no trace of gluten. These are places you can go with a group and those who don’t have to eat gluten free will neither complain about the taste and texture, nor about the price when compared to a “regular” french bakery in Paris.

All of these delectable cafés make for great temptation for high-carb treats. I don’t indulge often, but it’s hard to go in to buy a loaf of bread and not come out with something extra delicious – just because I can. I guess I’d better keep up this running routine to burn off enough calories and justify my sweet cravings!

Now if you’ll excuse me, I need to go indulge in a tartelette au citron meringuée. I’ll leave you with something to drool over. Can anyone guess the carbs in this baby? tartecitronmeringuee2

Diving in

I am not a writer. I’ve been wanting to start a diabetes blog for a long time but am a little daunted by the fact that I will have to actually write blog posts! But what the heck, I’m throwing myself in (somewhat strategically just after the 5th annual dblog week – maybe by this time next year I’ll actually have to courage to participate!).

That said, ever since my diagnosis with diabetes and even more so after the CD diagnosis, I have always made an effort to connect with other people who live with these conditions, online and in person. Over the past year or two I’ve gotten more actively involved in the diabetes online community (#DOC) and despite my own reservations, starting a blog seems like the logical extension of my interactions on twitter, on forums and through comments on other D-blogs.

I already know from experience that sharing stories can help both the storyteller and the “reader”. I hope that in sharing my story of living with diabetes and celiac, I can connect with others who have similar experiences, who are looking for encouragement about living well with either one of these conditions, and who can inspire me to do the same.

You can read a little more about me here.

Thanks for stopping by to check out my blog!